Wednesday, April 30, 2008

I wanted to share a few photos from the adorable shower several ladies in my church ward put together for me the first of the month. Everyone did such a lovely job and the decorations were so fun! Special thanks to Heidi and Bethany for taking pictures and a big thanks to Brooke for being the master mind behind it all (don't miss out on new pics and video below of the boys!)

I love this video of Jonah. He is developing such a cute little personality. Also, he has recently found his hand and is constantly sucking on it. I can't decide if he is teething or not but I think he is getting ready to. He drools and constantly is licking/sucking his hand! As a side note, the end of video grimace is due to a sneeze that was just starting to happen and mommy took the editor's privilege of stopping the clip. =)

We couldn't decide which of the two photos was cuter of Noah so we uploaded both. You can't see much but the close up is of a Noah with a messy face because he drooled his Smithecone drops (for colic/gas) all over his face. The second photo is of Noah after bath time with Grandpa.

Monday, April 28, 2008

A pic of Jonah cuddling with daddy and a video of Noah trying to sit up, he just started doing this and he tries to scoot himself out of his bouncer now too. Good thing we have him strapped in to prevent any funky moves!

Friday, April 25, 2008

To our dear, sweet friend Amanda: you are a "kindred" spirit! We love the oil painting you did of our boys. We want everyone to enjoy your work so we are sharing it here on our blog.

Love, Shane and Michelle
“Some things are not problems to be solved, they are facts to be coped with.” -Unknown-

So I have been debating how personal to get on this blog. I know a lot of people read it and so sometimes I hesitate in what I say but I just felt like I needed to write this. I just want everyone to know that it is going to take time for us to deal with all that has happened over the past year. I wish I could say that I have completely dealt with everything now that the boys are home and I have a sense of normalcy but it really is just the opposite. I am so thrilled my boys are home and already the NICU is becoming faded memories (I think more out of trying to cope than actual forgetfulness), I want to make that clear. But going through such a traumatic experience leaves one forever changed. I am grateful to the micro-preemie group that I belong too on Yahoo. I have found many moms in similar situations who can offer comfort and advice. Just this week I found a member of the church whose son was born at 24 weeks a few years ago.

I've pondered whether I should discuss the importance of sensitivity when approaching our family but I don't want to discourage others from sharing their insights and or comments. However, after much thought I do fill that I must at least say this, the best thing you can do for our family right now is just to tell us that you care. I had a long discussion on my yahoo group over the past few days on how to "cope" with those who just really don't know how to treat you or what to say. I've had several people relate that they just don't know what to say to us or worse yet, just act uncomfortable in our presence.

Most of my fellow micro-preemie moms have this to say, treat us like we are human but recognize we are going through a hard time. Don't ask us questions that you would a mother who has had a full term child as our children develop differently. Stand by our sides and tell us you care but don't ask too many detailed questions about our painful journeys. Most of us are still dealing with all the terror of delivering such a delicate being into the world.

Right now I find myself struggling with wanting to interact with anyone outside of my immediate family and for now, that is ok. Most of us who have been through this experience agree that we need time to put things in perspective and both spiritually, mentally and physically heal.

As one mother said yesterday, "We kind of thought we were crazy to not want our old life back. However, the reality is that our old life doesn't provide the comfort we need. So we are building a new one." I couldn't have said it better myself.

Thank you everyone, family and friends for understanding. You all are so wonderful that I know this posting will be taken as a heart felt try at letting you know what our world is like right now and how we are learning to cope.

Love, Shane and Michelle
More pics! So I'm thinking this blog is going to turn into one big photo collage. That is ok though, I think everyone enjoys the photos more then my actual entries. The first is of Grandpa Langston feeding Jonah and making cute faces (do you love Jonah's bib?) Jonah is smacking his lips at Grandpa and saying, "Where is the rest?" He has always been our better feeder of the two (and that isn't saying much in way of how much these two actually eat! My Yahoo group micro-preemie moms, you know what I am talking about)

The next two are of the boys in their Bumbo seat. Jonah will at least sit in it until he starts sliding one way or the other (still working on head control) and we have to intervene but Noah cries straight after about a minute. They aren't sure yet if they like it but it is good practice and helps them work out those neck and shoulder muscles which both need.

The next is priceless because it is a RARE moment. Noah is holding his nebulizer tubing, as if he actually enjoys his treatments! HA! We have to trick him and wait until he is asleep and then give the treatments otherwise it is non-stop CRYING. His pulsox machine just beeps at us madly because his heart rate shoots up to a ridiculously high range. So the other night when I peeked in after setting up his machine and he was lovingly wrapped around his tubing I thought, oh man. I can't waste a good photo opportunity! Especially when it is so RARE! Ha ha ha!


Thursday, April 24, 2008

Here's the boys!!! Ok, so I love the pics of Jonah giving Noah a kiss while smiling as well as the one of Jonah LICKING Noah. No joke, Jonah gave his brother a couple of good licks and decided he didn't taste so good. Ha ha ha!

Wednesday, April 23, 2008

Just a quick thanks to Aunt Valerie! She wanted the header to be just perfect for our blog page. It looks great!

Tuesday, April 22, 2008

Check me out! Noah has a good start at learning to walk, forget crawling! If we hold him up he puts one foot in front of the other and will walk along the carpet. His daddy never crawled, Shane just went straight to walking so we will see. Also, I thought you'd love the superman poses too. Noah will definitely be our "rough neck" because he loves to move all over the place and his favorite game is for Shane to push him up high in the air and move him around like a super powered airplane! He even pushes himself off Shane's legs and smiles at Shane.

TOO CUTE! I love Jonah's faces. The bottom close up is the closest thing I could get to a smile! Do you love the spiked hair? He has this tuft of dark hair growing on top of his otherwise bald head and I couldn't resist giving it a little "style." I also loved the photo of him staring at his frogs, he loves to swing and watch his frogs.

Check out these cute California boys, ready for some warm sunshine (above)!!

(Just as a random side note, I just realized how annoying my voice sounds on these video clips so sorry anyone for the baby voice. I think you forget about adult conversation when your vocabulary consists of cooing and other fun infantile voices.)

Sunday, April 20, 2008

Cute photos of Noah, Daddy Shane with Jonah and a video of the boys playing in their bouncers!

"Look not mournfully into the past. It comes not back again. Wisely improve the present. It is thine. Go forth to meet the shadowy future, without fear.” -Henry Wadsworth Longfellow-

I included this quote not only because I love Longfellow (one of my favorite poems is A Psalm of Life: Tell me not, in mournful numbers, Life is but an empty dream!) but because I find it something that I am working very hard at right now in my life.

It is very easy to get up and say, today I am done with the world. I will stay at home with my boys and live in my own little cocoon. I find myself constantly trying to remember that I cannot give up on believing that in the end all will manage itself and these crazy past few years will somehow align themselves and everything will make sense. I also cannot give up in believing that people are good and have good intentions, even when they aren't quite as sensitive in what they say. Just the other day I had a woman ask me if I had problems with Jonah maybe being "mentally retarded." Can you believe that?

Anyways, the boys have had a better few days, granted there have been a few moments of extreme "crankiness." Shane has had nights this weekend and he has somehow managed to hold both boys at once in several occasions. Both can really get each other going, if one starts crying the other likes to join in and so forth.

More then anything I think of how thrilled we are to have them home. Friday was a bit overwhelming as I had a few moments where I caught my breath and wiped a tear as I looked at Jonah and thought of the scary choking incident from Thursday. I just kept telling the good Lord I wasn't ready to lose either one of them.

So come what may, we are happy to have them home and with us.

Love, Shane and Michelle

Wednesday, April 16, 2008

“Is the glass half full, or half empty? It depends on whether you're pouring, or drinking.” -Bill Cosby-

Do you ever have a day that you just wish you could forget forever? Today was a day just like that. We have been so worried about Noah the past few days as he has picked up this bout of congestion. He gets so upset around feeding time because of course, his nose is congested. I've been trying to treat it with home remedies such as holding him in the bathroom full of steam right before feeding so his airway feels more open, etc. It does actually appear to be helping. Finally today though I decided I would take him in to the pediatrician. His regular doc was in a morning meeting so we met with a new doctor. He wasn't concerned and asked that we use saline nose drips regularly as well as a bit of vaseline to clean the tip of Noah's nose.

So here we are in the midst of being terrified that Noah is coming down with pneumonia and suddenly Jonah did a horrible thing.......he choked.

He just didn't "choke," he spit up (you know the kind that comes up through the nose and everywhere) and he immediately clamped down and REFUSED to breathe. I was playing with him when this all started. I waited at first to see if he would recover and then when I saw him during a dusky color I started freaking out. I grabbed him and started yelling for my dad. I probably did everything wrong but when your child isn't breathing and turning purple in the face the only thing you can do is instincts. I grabbed him and began treating him like a choking victim because he wasn't making any noise at all. Eventually I got my wits with me and placed him flat on the floor, grabbed a suctioning bulb and started suctioning out all the puke in his mouth.

Eventually, which felt like an ETERNITY, he started to cough and breathe but it must have been over a minute before this happened, all during which I almost had a complete melt down. My dad was on the phone with 911 and within five minutes we had cops and an EMT team there to assess Jonah and get him to the hospital.

Thank the good Lord Jonah did not aspirate. They kept him hooked up to a Pulsox for several hours to monitor any change in symptoms that would signal aspiration induced pneumonia. They ran a chest x-ray and saw his chronic lung but nothing that signaled serious issues. So after over 4 hours in the emergency room Jonah came home. He had his RSV shot today and has been really cranky on top of everything else, bless his heart. Shane and I decided that as soon as we start worrying about one the other does something horrible just to remind us that they are here too.

What a bad way to get Mom and Dad's attention!

I think today was by far the most terrifying thing I have ever dealt with when it comes to the kids. At least in the NICU there are trained nurses to take over and assess immediately the issue. There is never such a helpless feeling as that of trying to get your child to breathe.

We are still worried about Noah. We've had the humidifier on him all day as well as sitting with him in a steamy bathroom before feeding and using saline drops as well as Vaselline. I would have felt more comfortable if they would have ran some blood work especially with his history of pneumonia. Now all we can do is pray that these home methods work.

I have had enough of hospitals, thank you! I told both boys when we got home from the ER today that neither was allowed to put us through this again any time soon!

Thank goodness my parents are here for support. I absolutely would not make it through right now without them. Shane and my father have been able to give both boys priesthood blessings and that also helps put a struggling mother at ease.

Keep praying for these sweet babies, today was a terrifying experience and I hope we will never go through another one again.

Love, Shane and Michelle

Tuesday, April 15, 2008

Aren't we sweet? I loved these bibs from Grandpa Langston. I am a Child of God is one of my favorite Primary songs from when I was a girl and who doesn't love the Primary song, Jesus wants me for a Sunbeam?

Just a quick update. Both boys are doing ok. It continues to be a transition for Noah. His eating is sometimes good and other days barely acceptable. Of course we just have to keep going. I just keep reminding myself that this experience will get better and some day I will look back and won't be able to believe how fragile they were. Grandma and Grandpa Langston are here from Utah and they are a huge help. Laundry and dishes are done on a daily basis and I'm managing showers too! Whoo hoo! We will continue to keep you updated. Thanks for your continued prayers and support.

Thursday, April 10, 2008

In my sons' eyes I am a hero
I am strong and wise and I know no fear

But the truth is plain to see

They were sent to rescue me

I see who I wanna be
In my sons' eyes

In my sons' eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me
gives me strength when I am weak
I find reason to believe

In my sons' eyes

It's hangin' on when your heart has had enough
It's giving more when you feel like giving up

I've seen the light
It's in my sons' eyes

-Martina McBride-

I am sitting here seriously crying after reading the lyrics to this song. I love Martina McBride and I wanted to include a special thought at the first of this posting (of course I modified this song as she wrote it for her daughter).

Well, the adjustment stage for Noah has proven to be every bit as difficult as it was for Jonah. Poor Noah is actually a worse eater than Jonah and spits up so frequently. I often think they should have done some swallow studies in the hospital with Noah. He is on two reflux medications as well as the thickening agent in all his bottles and he still manages to spit up 10-15 cc's with several of his feedings. Right now his Sodium Chloride is giving him a lot of problems. We were waiting on the pharmacy to get it filled and the first dose yesterday made him throw up. Last night he cried the entire dosage and REFUSED to eat for nearly 4 hours afterward! Plus he coughed and coughed. His oxygen requirements went up to 3/4 a liter yesterday and we've had to keep him there pretty much since we switched him. Now when we feed him we even up him to 1 liter just so he'll have that extra boost. Yesterday afternoon we gave one more dose of the Sodium Chloride and he coughed for over an hour and again, refused to eat anything for several hours. I talked to two nurses yesterday. Of course, conveniently, his pediatrician wasn't in yesterday. The first nurse said just to watch him and if he started to show respiratory distress or needed even more oxygen then what we gave him to call back. Last night the nurse said it sounded all related to his medication (um, yeah!) but she was worried about the whole oxygen increase. She suggested late at night maybe going to the ER because the urgent care our insurance covers was closed but I told her we'd been monitoring his respiration rate and he was within his range, etc. I was also worried he might be dehydrated but we were able to get in enough ounces for the day to avoid that (minimum of 12). I told her how sick he was as a baby and that if I went to an ER I'd sit for 4 hours and expose him to all kinds of infections and I'd rather monitor him at home and call his doctor first thing in the morning. She said she understood why I wouldn't want him there and seemed ok after I explained that we were watching his respiratory rate, etc. Plus I gave him some extra nebulizer treatments too, just in case.

So I guess we may be spending another several hours at the pediatrician's this morning. Good grief, I think we'll need our own private room shortly. I hate the fact that this office hasn't seen many preemies, especially ones as small as Noah and Jonah. I always check them in at the isolation door and the nurses always ask why and I always have to explain to them they were extremely early and can get sick quickly, etc.,etc. "Oh, just throw a blanket over their carrier......" Hello, that is not enough.

Thank goodness our pediatrician spent his residency in Los Angeles so he has seen cases like Noah and Jonah and he is very, very careful with them. I really like him a lot. I just don't care for some of his nursing staff. Of course, some just gawk at Jonah's shunt and say things like, "Now, will he always need that? What happened? Why did he need the shunt?" I know I shouldn't be so sensitive but I just feel like some of these nurses need to get out a little more and get some broader experience. Plus some people can be so insensitive and make comments like, "Oh that just must be so hard. I just don't know how you do it, I could never do it." Or one of my favorites, "I used to want twins but know I now how hard that would be." It is so funny, I am sure people don't mean to be trite and rude but seriously I just want to say sometimes, "Did you really think that through? Do you really think that benefits me to be reminded of how difficult this is?"

Anyways, off my soap box now. I just had to take a moment and vent.

So Noah is a bit more settled tonight. We didn't give him the Sodium Chloride (it isn't life or death, just an electrolyte replacement so one missed dose won't hurt him) tonight and he is much happier and sleeping better.

I can say life is definitely crazy right now. Between these two kids we have every issue covered in way of preemie life and yeah, I'll admit that often it is really hard and I have to remind myself that I didn't do something wrong in a former life and this is my form of punishment or something. =) Obviously I think that in my most irrational moments, mostly at night when I am exhausted and both boys are crying for one reason or another or both are giving me difficulties with eating and I am waiting for morning/early afternoon for a shift change with Linda (or come Friday my parents) so I can get in a few hours of sleep.

I thought you would love the below photos of Noah and Jonah. Aren't they precious? I also included an adorable photo of Noah. I've had a chance to post so many photos of Jonah that I wanted to put something up of Noah. You would never believe how sick he really is, he smiles and coos and giggles like any normal baby would do.

Looking at these photos you can't help but think, this is what it is all about. As hard as this journey is, as much as I mourn never having the normal birthing experience or even normal infant experience I look at these beautiful angels and I know just what it's all about. Just like the song above, I am reminded of a more eternal perspective.

Keep praying for our babies.

Shane and Michelle

Tuesday, April 8, 2008

Noah finally came home today. We are so thrilled to have him home. It is already a bit of a challenge getting his meds straight. Apparently after several changes and checks before we left the hospital Noah's nurse still got a dosage wrong on his med sheet she sent home and one of the meds was never filled by the pharmacy. Good grief. Poor Noah, he is still on 7 medications as well as his nebulizer treatments (which he HATES), he cries straight for 15 minutes when we give him the treatments. *UGH*

I get night shift so I am up all night tonight. We have a pediatrician appointment tomorrow at 8:00 and after that I'll get to sleep for a few hours. Noah is hooked up to his pulsox which generally is ok aside from when he decides to desat and then I have to reposition him so he'll breath more deeply. He desats most when sleeping.

I thought you'd enjoy the photo below of Noah arriving at home. He was pretty done with his car seat by the time he got home. Also, I included a video of the boys sleeping in their bouncers side by side for the first time.

Hi all,

I knew there was a reason I was hesitating sending everyone a notice that Noah would be going home today. We are here in Fresno and it has been a mad house all day. The pulmonologist just made changes to Noah's meds and now he is going home on two different types of inhalers, one twice a day and the other every 6 hours. Meds had to be rewritten, called over to the pharmacy and on top of that the Pulsox we need won't come until Monday and we have to go through training for it. We did get the Nebulizer machine for his asthma treatments though which is great.

Good grief.

It probably is a good thing as Noah required a bit more oxygen during his "car seat challenge" last night. Although I am not sure why because the nurse said he never went below 92% with his oxygen but she upped his liters to keep him in the high 90's although the Pulmonologist said anything 92 and above was just fine. So I'm not sure what happened there but we have to redo the challenge sometime this weekend.

The good news is the Pulmonologist said that Noah looks really good considering everything he has been through, especially for a child his age and with the lungs that he has. So that is encouraging!

So supposedly things are set for Monday. Poor Shane, he is having to make all these adjustments at work and I feel bad. I KNEW this would be a possibility in the first place but what can you do? We have to be here so it is what it is.

Linda (Shane's mom) is still home with Jonah for the weekend so that is great. My Mom/Dad come out next Friday and my Dad plans to stay for a couple of months which we will need desperately.

I keep hoping come early summer both boys will be so much stronger and more stable.

Well, thank you everyone for all you do. Keep praying for our babies and for our sanity. =)

Love, Shane and Michelle

Wednesday, April 2, 2008

Noah coming home Friday -- !?!?!

Well it is looking like Noah will be coming home Friday. I do say that with a bit of hesitation and I've gone back and forth on blogging today but I decided to go ahead with it. We are going through the motions of getting oxygen equipment approved for his use. Hopefully he will be coming home with a Pulsox which will be great, this way we can keep a careful watch on his oxygen saturation. He is fluctuating between half a liter and a quarter liter of oxygen so it will be great to have the saturation monitor so we can know when to turn up his oxygen or turn it down.

Jonah has had a better day or two with feeding. He still protests here and there but it is mainly when he is sleepy and just not in the mood to eat. He did want to eat a bit early yesterday and again this afternoon (after only a couple of hours) so I fed him sooner. I think he really likes the Enfamil formula we are using. I would like to get Noah transferred over from Neosure but I know Shane would love to see us use up the dozen cans he bought from Ebay. We will see. It would be so much easier to have the boys on the same formula.

Jonah slept great last night in his crib which is good. We will see how it goes with two babies in the room. Hopefully they won't keep each other up! Jonah is quite a screamer when he wants to be! Noah is definitely the more "mellow" baby.

I am tired. I know I should just get used to it but I am still tired!! My Mother-in-law, Linda, will be staying through next week which will be nice. Then my folks will come down and my Dad will stay with me for a couple of months. This will be such a HUGE help as the boys will have all kinds of appointments, etc.

I am hoping summertime that both will be more stable and adjusted and doing better with eating, etc. It would be a dream if Noah where off oxygen by the end of the summer but I probably shouldn't expect so much quite so soon. =)

Well, we will keep you posted. I do hope this actually falls into place and that Noah will do well enough to come home. We have our fingers crossed.

Thank you everyone for your phone calls and well wishes. We certainly appreciate all the help we have received.

Shane and Michelle